Mat Fraser on the Future of Disability in the Media

While playing disabled characters has been, for the past 27 years at least, a great way for actors to win an Oscar, Americans haven’t actually seen many impaired people on their screens. So when American Horror Story: Freak Show introduced Mat Fraser as Paul the Illustrated Seal Boy in 2014, it was a challenge for some and a revelation for others. An actor with phocomelia, a congenital condition triggered in tens of thousands of children after their mothers used the drug thalidomide for morning sickness, Fraser has short arms and no thumbs. His casting, among others in American Horror Story, triggered a wave of think pieces about the depiction, casting, and exploitation-versus-agency of disability in the media. But although Fraser is a new figure to many Americans, this wasn’t his first rodeo. Long a presence in British media before coming to the States, Fraser has used his art and public profile to push and shape conversations about disability depictions, rights, and equality for years.

Punk rock fans with a sense of the European scene may know Fraser for his work as a drummer in The Spazms. British television watchers may recognize him from 2009’s Kung Fu Flid (or “flipper kid,” a term for a thalidomide child), the nation’s first disabled-hero action flick. Fringe theater fans may know him from his work in the Grææ Theatre Company or ONEOFUS, the radical production group he founded with his partner, burlesque performer Julie Muz (whom he met while performing in New York’s Coney Island Circus Sideshow).

Comfortable in his body, radical in his politics, and always willing to put himself forward to challenge retrograde depictions of disability in the media, Fraser coined the phrase “spacking up,” a riff on “blacking up,” to describe able-bodied people playing disabled roles. Last summer he organized Cripfest—a festival of disability solidarity and entertainment.

As Hollywood gears up for pilot season, in which networks explore new shows and castings, GOOD met up with Fraser at his cozy, well-lived-in Lower East Side apartment. Ever animate and exuding a potent mixture of confidence, frustration, passion, and humor, Fraser spoke about his experience navigating the world of television as a vocal and political disabled person, his thoughts on the status quo of disability in the media, and his hopes and prescriptions for where the industry could and should go in the coming years.

So you started acting when you were 35, back in the ’90s. Tell me about walking into that.

When I was 15, I auditioned for the school play and the girl I fancied, Caroline Proctor, was in the auditorium, because she was using that place to gossip over the lunch break. She was giggling and I looked up and thought she was utterly embarrassed at the notion of me being onstage. So I was utterly dissuaded form the notion of being in a stage group for 15 years.

Instead I became a punk drummer because my mom was having an affair with a drummer and he left a kit around at my house. I spent the next 17 years being a drummer and touring Europe in professional thrash and speed metal bands. Then I saw the Grææ Theatre Company. [In Greek mythology, the Grææ] were three sisters—[with] one eye, one ear, and one tooth between them. They could only eat, see, and hear if they cooperated. I watched them do Ubu [Roi] … and I was blown away by watching all of these disabled people onstage. I thought: ‘No, this is what I want to do.’ So I joined that theater group at the same time that I got all my disability politics.

It was all a wonderful, wild time in the late ’90s and early ’00s. We all operated in a sphere of what we called disability arts—all nurturing and supporting each other, with some people becoming allies form other outsider groups. But the second you try to do television or some other mainstream radio or other thing, you were met with … this wall of sort of fear and tradition.

How did you jump from the fringe theater world of disability arts to mainstream?

The Disability Programmes Unit [at the BBC]—I got a couple of programs out of that. These were … ‘Let’s look at Mat Fraser, the radical artist drumming and rapping and being all radical!’ Expanding my fan base from 15 to 150. Then small, little windows of opportunity would occur as people thought: ‘Oh, we could use a disabled person for this.’ I started getting voiceover work because they could say they’d employed a disabled person but they didn’t have to engage with disability in any way. But it’s better than not that. It would eventually lead to little bit parts.

But the fear and politeness of English people and the lack of physical access because people had never thought of it, like aligning all of the cables in the middle of the room so a wheelchair could go over them … I was always there with people learning to do it for the first time. I’ve patiently—most of the time—helped people get it a bit better. That seems to be my role in life. I accept that.

I’m slightly irritated that there aren’t people in their early 40s and late 30s—what I would consider a generation behind me—prominently pushing. I don’t see anybody pushing in the way we were pushing. You don’t want there to be a gap. But I came out of the Thatcher era. We knew who we were fighting … you went out into the street and threw a brick in a fucking window. The world’s very different now. Well done, everyone. You’ve managed to divide and rule, subjugate the masses into servile sheeple of your neoconservative global capitalist agenda.

But we shall fight back, shan’t we?

I imagine in the ’90s most of the roles out there were inspiration porn. If you walked into that world with your politics fairly well formed I’d think you would push back on that.

I actually didn’t get approached for any of those inspirational porn roles because I wore my politics on my sleeve so strongly. Only radical experimental people ever approached me. I look back and I regret that because I think I scared a lot of people off. But it is what it is.

Inspiration porn’s what happens when you leave a story around disability in a room with nondisabled people who don’t know many disabled people.

There are a lot of people with disabilities who will come and endorse that work for them.

Of course there are. Like there are a lot of dwarves who will be thrown or tossed. I’m never going to criticize a disabled person for trying to make a buck, but you do wonder…

Stella Young, RIP, an Australian disabled woman who worked for [the Australian Broadcasting Company] with her program “Ramp Up,” was the one who really coined that phrase: ‘inspiration porn.’ Her famous TED Talk about [it] is simply the best 10 minutes on disability awareness that I’ve ever seen in a public forum. It’s required watching for anybody.

‘It’s amazing how you do that,’ people will often say. I say, ‘Well, you would if you were in my position.’ The human brain is wonderfully adaptive. Why do you think we’re the dominant species for fuck’s sake? It’s because we adapted! There must have been a one-armed caveman who thought I know I can fix the fucking ax to one end of a stick with my foot, I don’t know.

[Laughs] I’m sure there was.

Dude, it must have happened! Because injury was pretty rife in those days.

I think people are coming around against inspiration porn. I think people [understand more] because of the way they got it right with black, gay, transgender [media]. We’re all different. But we all have similarities. We’re not that white, able-bodied, middle-class, heterosexual executive scared of losing his job who just wants ideas that were like the last successful thing.

Yeah, but let’s take black media for an example. It’s robust and there’s a lot of cool, new stuff that comes out of that sphere today. There are more black voices in the room than there used to be. But when that media is consumed by, produced within, or mediated through mainstream white society, the preferences (in this country at least) tend to wind toward the same repetitive slave portrayals.

Yeah, slaves and gangsters … And now there’s a whole ‘Fuck the Oscars’ thing going on.

The bottom line here is that the power brokers have to [say]: ‘I don’t want to see any more of those goddamn slavery films! I’m an executive—I want to see films about black executives!’

[But on disability media,] I have been using this fucking phrase since 19-fucking-96. And I can’t believe I’m still using it now: ‘What [the disabled community needs] is a Spike Lee.’

And we don’t even have a Sidney Poitier yet. Fuck it, we don’t even have a Paul Robeson. I mean, give me a fucking break!

For some people, it’s easy for them to never engage with another race. Yet every society has disability no matter how isolated or segregated from other people it is. It’s always there. So why do you think it is that, despite that visibility and long universal history, the community hasn’t had, as you put it, a Lee or a Poitier or a Robeson—strong, mass-cultural touchstones?

I don’t know. It’s really fascinating. You look back to [Lionel] Barrymore in the silent [film] era. He was a leading man. Then became a wheelchair user. And he was so famous that they just carried on having him as the lead even though he was now in a wheelchair.

Why didn’t that happen to Michael J. Fox? He’s a fucking great actor. Why couldn’t he have been a fucking great actor with a wobbly head? Why couldn’t [he] be a character with Parkinson’s—and it not be about the Parkinson’s but doing a court case and the Parkinson’s makes it difficult, just adds drama? Come on guys! I can find an easy way to thread a disability through a narrative and make the narrative better—i.e., use the tropes of society’s disabling of an impairment to further the fundamental characteristics of a character at a psychological, deep level.

What I’m trying to impress upon casting directors and show makers now is, here’s my recent experience: Traditionally the demographic that [has] the most difficulty and embarrassment around my impairment are teenage girls because … they’re bombarded with commercial imagery of perfection. It’s awful. But it’s what happens. So if I walk past a school at checkout time, the boys will sometimes snigger to prove that they’re tough. But the girls will break into muted hysterics as they inevitably turn inward on their gang circle. I know what’s going on—they’re having some kind of difficulty with my impairment. They’ve got to go through it. It’s fine, I get it. But then you put me on [American Horror Story] in a lover role with a young woman and I’m going, ‘See me as a man not just a lover.’ It’s a close-up and it’s well shot—and I have 18,000 teenage female fans. They now view me in a world that could include romantic stuff. They’re 15. I’m 53. I’m not saying the bad thing. But they can imagine me dating their mom or something.

That you can be a sexual figure.

Yeah. But more importantly—and here’s what I love—when it comes to prom night they might even ask the guy with the funny arm on a date because they saw [someone] on telly like that. That’s how influential television is. That’s why I’m doing it. I want to make the art that life will imitate.

I really feel that we’re on the precipice of a cultural turnaround in the way that the mainstream media deal with disability. I would like to be involved in watching some young man or woman get [the chance to win a major award]. There are some wonderful young actors out there.

And we are better at playing ourselves than other people. We just are. I didn’t like Avatar. It was a wonderful film. But it was so from an able-bodied person’s perspective in terms of the avatar being able to run and all that stuff. Yeah, if you used to be able to run and then got hit by life as a wheelchair user, you probably wish you could run again. Me? I don’t want thumbs. I don’t want your elbows and your long, weird fucking hands that are somewhere over there. I like my body. I was born with this body. So I ain’t got no grief or anger about that. What I’m angry about is the fact that I’m not treated as an equal. And I want to just show that in art.

I was happy to portray a freak in the same way that black actors are happy to portray slaves. It’s history. But now let’s see if they’re going to have me as neighbor, father, friend, lawyer. I’m kind of impatient for the time when we’re going to start cleverly using impairment for [deep] psychological exploration. But I think we’ve got to wait like 10 years before that happens.

You mention that we’re on a precipice. But if we’re 10 years away from a sophisticated use of disability in the media, as you also say, then what lies directly off the precipice?

They’re looking for people they can hang stuff on. And they’re going to be like medium impairments. There’ll be a whole deaf thing going on. But unless deaf program makers start making programs, or are part of the team to advise, they won’t get it right.

We will get some medical expert in a drama—fairly safe five to seven lines in an episode casting where the person is fairly static. Then, ‘Well, that went well, maybe in the next [season] we can give them like a wife.’ Those are important. Those are the really conservative mainstream people actually having a go. They need to be patted on the back, given a dog biscuit, and told, ‘Well done, now do a little better next time.’ I know that sounds really condescending, but … sue me.

Trust us. We’re good, and people love us out there. I go to conventions and I meet a lot of people who … buy my 10x8s. Occasionally one of them’s got an impairment and they want to be an actor and it’s really cute. It’s weird to hear [‘you’re my favorite actor’] from nondisabled people—all these weird, misunderstood Goth kids that have decided that only I understand them. But it’s so tactical to think: ‘Oh my god, disability could be so different. People’s understanding of disability and how they feel about it would be so different if we had just one major network series with a disabled character in it played by a disabled actor.’ And I know that’s going to happen in the next five to ten, wouldn’t you say? But then again, I expected that 15 years ago.

It’s always just around the corner, isn’t it?

Right? But I’m naïve and perhaps it’s for the good. I just know that once people get a load of what we’ve got, they can relax around us. The people who are nervous around us are nervous because they’re scared of offending people. There’s a sort of glass brittle eggshell worry that surrounds any project to do with disability. We have to get rid of that. We have to find an ease.

We’ve been talking about the importance of getting someone with an impairment on a mainstream screen. But for it to be good, as you say, you need someone involved in production from that perspective. So that’s another hurdle—not just having the gatekeepers let you in, but having people with disabilities as creators, producers.

Yeah, and it seems to be a hidden barrier, doesn’t it? In the British television industry there are loads of women who are second in command, but very few who are the boss. That can’t be because they don’t want the job. It just can’t be.

And in America we’ve seen that just having somebody in the room doesn’t always guarantee that their voice is listened to and respected.

Damonsplaining? Absolutely. You are the cripple in the room—I’m allowed to use that word; it’s reclaimed. How do you not get shouted down? How do you get the position of power?

You start … by being a disabled writer that writes normal stuff that’s nonthreatening that then is allowed to introduce one disabled character, then is allowed to expand their story [season by season]. Then somebody meets this [writer] in a lift and goes, ‘We just had a meeting. We need some more disability. You could be the guy. Do you think you could write something for us? Not too threatening’ … Then everybody’s going to go, ‘We must have writing like that! We need our Cripples in Space, because that’s the most popular thing!’ That’s when the floodgates will open. Then I’ll go, ‘My work is done.’ [Laughs.] No, no, then I’ll go, ‘My work is just beginning.’

In the old days before American Horror Story, people didn’t even answer my call. I try to impress on them how the audience is ready. I can see they’ve absorbed that to various degrees. It’s a very exciting time to watch this space. 2016 is going to bring forth a thing to do with TV and disability; I know it is, in America.

Then there’s the challenge of making something—I guess you could say covertly political. What’s the mainstream delivery mechanism to get more people to engage with a wealth of insight they may not expect, fed to them in a way that’s widely accessible?

Trial and error.

You need to make people sob with injustice—not pity—get people to really connect. How you get people to really engage that political disability story is by combining it with some classical American narratives that people recognize and getting them to think that that’s them or that’s their body or that’s what they would do … I think we need a young, heroic wheelchair user. Rugged. I think we need look no further than the recent batch of vets; some of them must have some good acting skills. I just don’t fucking get it. If the idea of a hero is it’s against all odds and they win, how much more odds do you need than a wheelchair and then making them do all the same shit that Rambo had to do? Someone’s got to do it, don’t they? It’s about time.

I am surprised there’s no dramatic interpretation of Murderball or something like that.

Right? We can do this! Vaguely talented disabled people absorbing this missive: Get into drama school. Use the law to force their hand to get what you need. Because in five to ten years’ time, the industry’s going to turn and go, ‘Fuck, where are all the disabled actors? We need good ones.’

Is there anything else you want to say on this subject, or about moving into the future?

People out there with disabilities who think they have production skills, please, please, please develop them. Become an assistant producer. Become a producer. Become a serious producer. Become a commissioning editor, a showrunner, a head of programs. Then interesting commissions will occur. … Tread carefully with your one foot as you navigate the suspicion and conservative rebuttals to your eventual head-of-program success. Because we need that much more than we need me—the person trying to be the actor. If I get successful, at best it’s one production that was good. But if the producer becomes successful, we open an entire new chapter of [disability] programming.